An almost normal life

Tim, 9, developed type 1 diabetes three years ago. His parents, Manja and Thomas Herz, had no time to bemoan this blow of fate. By the second day after the diagnosis, they had their hands full learning about the disease and how to deal with it. A challenge that gave them strength.

Tim can eat whatever he wants. He just has to calculate in advance how much insulin he will need to inject to make sure his body can handle what he eats.

A multi-family house in Bottmingen, canton Basel, just a stone's throw from a primary school and outdoor swimming pool. This is where Thomas and Manja Herz live with their son Tim. The three have agreed to talk about their day-to-day life, which changed completely when Tim developed type 1 diabetes. First of all, the diagnosis did turn the family's life on its head and shook its members to their core. Today, though, they lead an "almost normal life", as Thomas Herz explains after welcoming us, before Tim adds that his disease "isn't actually that bad."

"Almost" and "actually" – over the course of our discussion, it quickly becomes apparent how much these little words conceal. For the Herz family, from the moment they wake up to the moment they go to bed, every day runs to a schedule dictated by Tim's disease. For unknown reasons, in June 2012, his immune system started destroying the insulin-producing cells in his pancreas. Insulin acts like a key that opens cells in the body so that they can absorb sugar. This is vital, as sugar supplies the human body with energy.

Insulin – the elixir of life

"In healthy people, the body starts to produce insulin when food containing carbohydrates is eaten," Manja Herz explains. For Tim, the insulin has to be administered externally – the parents and the boy together effectively act as his pancreas. This is a demanding role. "Tim's blood glucose level has to be within a certain range at all times," his mother continues. "Between four and seven," adds Tim. If it gets too high, there's a risk of damage to his organs. If it drops too low, he may fall into a coma. The problem: food is just one of the potential triggers of fluctuations in blood glucose levels – and it's the only predictable one. Other factors include stress, grief, excitement and even physical activity. "This is why we measure his blood glucose five to seven times a day," Thomas Herz says. If his level is too high, Tim needs extra insulin; if it's too low, he needs orange juice or dextrose immediately. Tim explains how the measurement works – he jabs his fingertip, puts a drop of blood on a test strip, inserts the test strip in the measuring device, and reads off his blood glucose level. "7.2!" he exclaims, "that means I can have a snack."

On the table is a bowl of cream caramels and a plate of delicious-smelling flatbreads. Thomas Herz anticipates the question whether caramel sweets and Basler Fastenwähe are the right snack for a diabetic: "Tim can eat whatever he wants and as much as he likes." He adds: "We just have to calculate in advance how much insulin he will need to inject to make sure his body can handle what he eats."

Manja, Thomas and Tim Herz are experts in the field of type 1 diabetes now. "After the diagnosis, we were looking at a mountain of information," Thomas Herz says, "we had so much to learn." A day after the diagnosis, they were asked to meet experts to learn about the disease and how to deal with it. They've since successfully made the difficult journey to a new normality. Many things that were completely strange at first are now familiar and new procedures have become routine. For the parents, for example, it's now completely normal to check the blood sugar of their sleeping child before they go to bed, and frequently also during the night. And for Tim, it has become unthinkable to leave home without his bright-blue emergency bag that holds his diabetic pass, measuring device and dextrose, or to swap his mid-morning snack with a fellow student. "We've accepted the disease and made it a part of our life," says Manja Herz, telling stories of wonderful holidays on the Baltic coast, a cruise and the first skiing holiday together this year, before adding thoughtfully: "Our next milestone is for Tim to become more and more independent and take more responsibility for his blood glucose level." After all, puberty is just around the corner.

A year ago, playing table tennis was impossible for Tim. For father Thomas, too, this is great progress.

The parents are reachable at all times

Discipline dictates and will dictate Tim's entire life. Before he eats anything, he has to know how much insulin his body needs to process it. The procedure is a daily ritual at the Herz's dinner table. Food is weighed before tables and lists are consulted to calculate the carbohydrate content and to work out the quantity of insulin Tim will need. At a pizzeria or McDonald's, they have to estimate. "We've got a lot of experience now, it all works out quite well," Manja Herz says. And not only at home, but at school as well. Tim goes to the normal local primary school. Twice a week, on Monday and Tuesday when his mother works, he also eats at school. "We've explained type 1 diabetes extensively to all the teachers and support staff involved," says Manja Herz, "and with the help of experts, we've instructed them on how to deal with the disease." She and her husband also maintain open and lively contact with all those who look after their son. Tim's parents receive a copy of the menu early on from the school, so that they can agree on the quantity of insulin needed with Tim. And the teacher notifies them immediately if Tim's behaviour or condition becomes worrying. If the need should arise, Manja or Thomas Herz can be at Tim's school within a short time, any time. Both are reachable at all times, and at least one of them can be at the school within minutes. But it's been a long time since either of them was called in. "Tim's average blood glucose level, which is checked at the hospital every three months, is well managed," Thomas Herz explains. And is Tim happy with this? Tim nods.

The elixir of life and joy of living

But now, Tim has had enough of talking. He wants the snack that's been sitting in front of him all this time. "Okay, show us how you do it," his father encourages him. Tim gets up, rushes into the kitchen, brings back a small set of kitchen scales, puts it on the table and weighs the flatbread. "60 grams," he reads, "that's three bread units, which is 1.5 units of insulin." Thomas Herz nods, and the boy puts the value into his insulin pump, which he wears at his waist. Through a thin plastic tube and needle in his abdomen, held in place by a plaster, 1.5 units of insulin are injected into Tim's bloodstream – and he finally gets to eat his snack.

Having finished his flatbread, Tim grabs one or two caramel sweets, gets up from the table and says goodbye before heading out to play. Are his parents worried? "Less and less," says Thomas Herz, "because we know that Tim is very aware now of whether he's at risk of hypoglycemia, and that he knows what to do in that situation."

He and his wife are very close to their goal, which is for Tim's life to be the same as that of his healthy friends of the same age in as many aspects as possible. Today, the nine-year-old is doing things which seemed unthinkable only a year ago – he takes guitar and table tennis lessons, messes around with Leon and plays football with Max. How did Tim's father put it? The Herz family lead an "almost normal life".